Sunday, October 12, 2008

Conflicted feelings, jumbled thoughts, and things I wonder

I probably should do myself a favor and spread this stuff over a few days' postings to help me meet this 31 for 21 blog challenge, but this is what's on my mind at present, so here goes:

Our local Buddy Walk is coming up on November 2, and I am feeling conflicted about it. On the one hand, I feel like we should take part, we're supposed to. It's the right thing to do, to go connect with other families of children and people with Down syndrome, to stand united, raise awareness, celebrate our child who has DS. But there's a big part of me that doesn't want to go. I'm afraid of seeing so many people with DS in one place, how that might make me feel. Sure, it might be uplifting and inspiring . . . or it could be depressing. I don't want seeing the whole range of how DS affects different people affect my expectations of Finn, of my feelings about who he is. I want to learn who Finn is and who he will be through my own eyes, and not through the kaleidescope of being among thousands of people with DS. I don't even know if that makes sense. And then I feel terribly guilty, too, for not being completely eager and enthusiastic about involving myself and our family in what is supposed to be such a meaningful event. I know there are families who are very new to the world of DS, families with babies younger than mine who have DS, and they're jumping in feet first and feel very positive about it. I don't feel like I'm there. And it makes me wonder if something is wrong with me. I don't want to surrender to DS. I'm not ready.

So I don't know what we're going to do about this year's Buddy Walk.


Yesterday I was at the store with Finn and, as usually happens, someone in line behind us was admiring him. "He's so cute!" Etc., etc. I always wonder, do they see that he has DS? Do they really think he's cute? Or do they think he's cute for a baby with DS? How sad that I have such a hard time trusting people's motives. It brings up something I've been podering, though: would it be better for people with DS to not have that certain look about them? Or is it best that they do, so that people know? Would it be more awkward for an average person to strike up a conversation with someone who looked "normal" (for lack of a better term), and then realize during the conversation that the person they were speaking to wasn't what they appeared to be? Or is it better that when someone sees a person with that "DS look," they know what they're getting into (well, sort of - they probably really don't, but for the sake of this lame argument I'm having in my head . . .).

Anyway, of course there is no answer to this question, and I don't even know why I think about it. Well, yes, I guess I do. I think about it because I know that Finn's DS facial characteristics are very subtle, and I guess I wonder if that will be a blessing or a curse to him as he gets older.


Here are some things I wonder about:

~ Does an adult with DS have to have a legal guardian, even if they are able to live independently?
~ Can an adult with DS go into a bar and order a drink - or go into a liquor store and buy beer?
~ Can an adult with DS vote?
~ Can an adult with DS serve on a jury?

And here's a burning question:

~ When and how does a person with DS become aware that they have DS? Do the parents sit down and tell them at some point? How would a conversation like that go? How do children feel upon learning that they have DS?

That last set of questions is something that's bothered me for a while. I know a lot of parents - myself included - worry about how to tell the other children in the family about it. But how do you tell the person who has DS?


heather said...

oh, lots of stuff in this post. But I want to comment on a few. The buddy husband still doesn't go to many DS activities with me. He doesn't like to see that far in the future. I remember it being difficult for me to see teenagers and older children with Ds. I just wasn't to the point of seeing the positive in it until Morgan was older. And honestly, it can still be hard for me now.

Is it better for our children to have a unique look? I hadn't thought about that one until my pediatrician brought it up and told me she thought it was a blessing because people know to give them the benefit of the doubt from the get go unlike Autism. I think it is interesting that most children don't realize anything is different with Morgan until they have been playing with her for awhile. Then I can see their little minds working and thinking as they look at her and try to figure out things. "Why is she wearing a swim diaper, etc."

When do you tell your child they have DS? We just talk about it in our regular conversation around the home. I love Karen Gaffney's story (google her name and read her incredible life story, if you haven't heard of her). Her parents told her from the very beginning of school that she had DS which meant she had to work harder and study longer to accomplish the things she wanted to do. She has accomplished so much and her parents are my heroes with all they did to help her learn and earn her associates degree. The best thing about DS is to just take one day at a time. Enjoy the journey as you go! :)

Chrystal said...

Wow, that is a lot. And you are completely and utterly justified for worrying, wondering, and asking.

You couldn't have dragged me with 50 wild horses to a Buddy Walk last year. That's why I thought it was such a big deal when I saw that family with such a young baby at ours...because I envied them. Everyone isn't like that. Please know this. We all come into our own at different times...and it's completely ok. My reasons were the same as yours and look at me now. I'm inviting whole families over to my house! I had a party to celebrate kids with special needs, for crying out loud! Eh, it takes time.

I don't have all the answers, but here's what I do know:

1. Finn is stunning. People see a cute baby. That's it and that's all. If they do see Ds, then they've had a sibling or a child with Ds and they have no ill motives.

2. When I wonder about the blessing vs curse issue, I think about parents coping with autism. It's hard either way, I think.

3. All adults with Ds don't need guardians. Some have the assistance of an aide, some don't. Some have partial guardianship for legal purposes. It all depends.

4. I love Dan Drinker. Watch him vote here:

Cheri said...

I think all your thoughts and wonderings are so normal and all apart of your journey to come to terms with Finnian's diagnosis. :)

I actually think you and I might be at the same Buddy Walk if you were to go...Angel's Stadium?? If so, I wanted to let you know that we went last year, it was our first walk and I was nervous to go as well. I felt sheepish inviting people.."Would they really want to go, or would they just feel obligated?" ...(but I actually had people this year ask ME when the Buddy Walk was again, they wanted to be sure they were there...that felt so good!!) I was afraid to see the young adults and adults with Ds as you are, I wasn't sure if I was ready for it and...also nervous what my older son would think. All normal feelings too I suppose but I was so glad we went. And my older son didn't want to leave...he was having so much fun!! It actually was inspiring to see such awesome, amazing, beautiful, and normal families going through the same thing as us...I saw so many families handling the diagnosis with such grace and lifted my spirits and I left encouraged...and actually grateful to be apart of such an amazing group of people. If you do go...I would love to connect with you there :)

Also, to answer your question about whether a person with Down syndrome can vote... it is funny because I had the same question so I researched it and it is one of my posts from a few days ago on my blog

What I found is...our boys WILL be able to vote!! :)

Miriam's mommy said...

Related to your last questions, do you listen to This American Life on NPR? Today's episode featured a story about a woman with a son with mosaic DS who didn't tell her son until he was 14.

-sarahr (a follower from

Tricia said...

I was going to suggest going to Dan Drinker's site too. His brother is documenting much of Dan's and Dan's family's life and it's truly wonderful work (in my opinion). It's just normal ol' life--which I find...inspiring? normal it just FEELS good? I duuno.

In one video you will see that Dan orders beer at a baseball (maybe it was basketball, can't remember) game, and he also intends to vote (for Obama). He has a girlfriend and he's a great dancer. He's funny and compassionate and just an all around great guy.

I was going to mention the This American Life episode from yesterday too. It's about Mosaic DS so it's a tad different angle, but still. I wonder too about when/if to tell Georgia. But at the same time, it's just such a part of our life I am fairly certain she will be self-aware enough to recognize that she is "different" and why.

I've had all those questions too! One thing that I always remind myself is that Georgia is part me and part her father with an extra DS bit thrown in. I think being part of each of us will shape her...she is not just DS...ya' know what I mean?

Carla said...

As you know, Lisa, I read Finnian's Journey everyday, but I don't always comment. I, too, wanted to mention the This American Life program re: Mosaic Down syndrome. I heard it (well, part of it since it was on at bath time here) and after the kids were asleep I went looking for the link to send it to you, but I couldn't find it.

I can't say anything more than what others have already said except that I believe you will find a way to talk to Finn about it in the same amazing way you discussed it with Kevin and then Joey. It is so apparent to me that you are finding your way one day at a time.

Laurie said...

Yet again, I think that you and I are on the same page. We acutally went to our Buddy Walk today!! I just wrote about it on my blog...
When, oh when is it going to get easier? Does it ever?
Lots of love~

datri said...

My DH still feels as you do in regards to not wanting to compare his kid to other kids with DS -- and Kayla's 4 now. So, as I've mentioned in earlier comments, he doesn't go to any DS events or stuff with me. That's fine, don't feel that you have to carry the DS banner around if it doesn't feel right to you.

I think the only people who have noticed that Kayla has DS are either people who have a relative with DS or work in a disability field. So I don't even think about it anymore when people say she's cute or whatever. I don't even feel like I have to justify her development when people ask how old she is anymore. But it took me well over a year to get to that point.

As for the 4 questions about an adult with DS, no, yes, yes, yes. LOL. And to throw another one in there, yes, males do need to register with the selective service (draft) when they turn 18.

It's funny, part of me is sort of relieved that Kayla is "atypically delayed" because I don't think she will ever understand that she has DS and what that means. I don't say that to seem like I've given up on her, but I do know and accept her limitations.

I know that other "higher functioning" kids are well aware of their differences.

You're just taking the first steps of this journey. You'll find your way.

Anonymous said...

Wanting to learn who Finn is thru your own eyes rather than thru the kaleidescope of others makes a lot of sense to me.

Not to say you should or should not go to the BW. Something good may come from it, or you may actualize your fears. But don't be dragged by 50 wild horses.

Lisa, today's comments to your post from all concerned brought tears of joy--with all their wisdom, sensitivity, experience, and love. Another plus, thanks to Finnian, as you have expressed previously. God bless Heather, Chyrstal and the rest of today's commenters, and everyone else every day from the beginning. They touch all of our family, sharing our joys and pain with us.

Grandpa Joe

Cleo said...

Lisa, nothing is wrong with you. I think you are an amazing mother who is doing her best at any given moment. If you feel like going to the BW that's OK, if you don’t feel like going that's OK too. We all accept and surrender to things in life whenever we are ready, we have the right to move on at our own pace and nobody can judge us for that, just continue to do your best one step at a time.
Please try to be easy on yourself, you are giving Finn exactly what he needs “your unconditional love” and that is the most important thing of all, that’s all he really needs.
Finnian is an individual first, what’s important when someone looks at Finn is that they can see him as the beautiful baby he is, not if they "know" he has Ds or not.
I think is a good thing to get to know Finnian for who he is, he will be showing you the way and you will just know what to do. Everything is going to be OK ~ .

Alycia said...

First and foremost, follow your heart. Don’t do something because you feel guilted into it or you “feel” like you should do it. If you’re not ready to do the walk then don’t. That doesn’t mean you don’t support DS and the meaningful events that help DS children and families. It’s like the Breast Cancer walk or any other walk. I have never done a walk but that doesn’t mean I don’t support or do things to help the cause. My entire kitchen is pink! : ) Wait until your ready to take that step because the fact is, it is a very big step for you. Maybe right now this positive meaningful event could actually have a negative effect on you or stir up more negative feelings rather than positive ones. That doesn’t mean next year it won’t but maybe this year it will. Maybe right now you’re in “over-analyzing” mode and it will just be brain over-load for you. It’s okay to admit that and to make the best decision for you and Michael. You shouldn’t feel guilty about that. It doesn’t mean you’re pushing reality away or hiding from it. It might mean that but it also might mean you’re just not ready to jump in head first. Maybe go with just Michael or just a friend and you? I would love to go with you. But if you’re not ready then don’t do it and most importantly don’t feel guilty about it.

Jen said...


If you don't feel ready for the Buddy Walk, don't go. And don't beat yourself up about it. Maybe you'll feel differently next year. And if you don't, that's fine too.

I hadn't thought about telling my kid he has DS. Had considered the siblings, but not him. So thanks for giving me something else to worry about. :) I like the advice of Karen Gaffney's parents though that was mentioned previously. Seems like a good plan.

Here's my weird question about people with DS: can they be organ donors? I haven't wanted to ask any doctors because obviously I'm asking about my own kid and that's pretty morbid, and I hope against all hope that I'll never have to find out, but I am curious about it in a general sense of being curious. Maybe I'll ask Dr. Google.

Jeanette said...

Wow, you got a lot of great responses to your questions. Take heart in knowing that you are not alone in these thoughts/questions. We all have had similar thought and concerns. We went to the BW last year and our daughter was only 3 months old. We even put together a small team, although we had NO IDEA what we were doing. I have never done anything like that before. We were pretty absorbed in her for the day so we didn't have a chance to compare. It was good for us, but I know many other families who were on the other side of the coin. The BW concept was too much for them. Just like many other comments left in this post, the advice that you should follow your heart. If you are not ready, don't go. You don't want to be turned off by the event. If you are ready next year, then head on out there.

The whole journey with DS is one that you need to take at your own pace. As for the other questions, it looks like most people have answered them. Just recently on my DS yahoo group the subject of telling a person that they have DS came up. The answers we quite varied. Some told their children early, some late. Most said that their kids didn't really get the concept, and many just said "ok" and moved on. Either way, Finn is little, try not to worry about the years to come. Take it one day at a time. To much thinking can just stress you out. Just enjoy his precious smile.